LRF Forum: Survivorship

Part 2 of what I learned at this year's Virtual Annual North American Educational Forum on Lymphoma from the Lymphoma Research Foundation.

As I said last time, I attended a session on Follicular Lymphoma, given by Dr. John Timmerman. Some of the good stuff he talked about was on survivorship -- what happens after treatment is done. I also attended a full session on this topic given by Dr. Carrie Thompson from the Mayo Clinic. 

I've mentioned Dr. Thomspon in the blog before (like in this post about Patient-Reported Outcomes). I really like her a lot. The research she does is focused less on treatments than on patients, and what happens to them during and after treatment, and how the profession of oncology can do a better job of dealing with the human elements of cancer. She's really great.

Her session at the forum was called "Now that I have lymphoma: What can I do?" The focus was on how lymphoma patients can control certain things in their lives to help themselves feel better, mentally and physically. That's especially important for many of us with Follicular Lymphoma, who may have to wait months or years between treatments. Staying as healthy as we can during those times can be very important. 

My notes weren't as good as I would have liked, since I was trying to pay attention to what Dr. Thompson was saying, but I'll share some of what she said.

The things that we can do for ourselves to hep control some of the stress and anxiety that comes with a diagnosis include 

• Exercising (as Dr. Timmerman noted last week, it helps reduce stress and assists the immune system). She recommends that her patients do some ind of aerobic exercise 3-5 days per week. Even walking is fine. Try to build up to 30-60 minutes a day, and doing it in small chunks (5 or 10 minutes at a time) is great. Aim for 7000 to 9000 steps a day. Strength training is important, too, a couple of days a week. And so is flexibility and balance training, like yoga or stretching. Even if 9000 steps seems far away from where you are now, getting up and moving every day is helpful. And have fun with it.
  
• Eat healthy. Dr. Thompson recommends the Mediterranean diet for her patients. Here's a link to a description if it from Dr. Thompson's Mayo Clinic, but if you're unfamiliar, it involves eating lots of fruit, veggies, whole grains, and healthy fats; getting protein from fish, poultry, beans, and eggs instead of red meat; limiting dairy; limit sugar; and having an occasional glass of wine. And coffee is OK, too. The "diet" isn't really set, with specific numbers or portions of specific foods. It's more of a general approach to eating. And, she was clear, no diet is going to cure anyone's cancer. But this approach can help keep you healthy.
• If you are feeling anxious, do things like exercising to manage stress. If necessary, talk to your doctor about getting some help, like a social worker or other mental health professional. I've said it before -- Follicular Lymphoma is an emotional disease as much as it is a physical disease. For many of us, we have way more emotional or psychological symptoms than physical symptoms. Be sure to take care of them, too.
• [And let me just mention this, while I have your attention. Around here, this is "Movember," not just November. Men stop shaving and grow mustaches to call attention to men's health. That includes mental health, all you men. Don't let notions of manliness keep you from getting help if you need it. You're not helping anyone by hiding how you're feeling. Ask for hep if you need it. That's a message from me, Bob, not from Dr. Thompson, but I'm sure she'd approve.]    
• Coordinate your care. Make sure your oncologist is talking to your regular doctor (internist, general practitioner, or whoever else you see regularly. Don't assume your health needs are all taken care of if you only see your oncologist. He or she won't be paying attention to things that are not cancer-related. And make sure those two doctors are communicating. Electronic records make this a little bit easier, but my regular doctor and my oncologist use two different systems, so I make sure to give both of them updates about what the other is doing.

Dr. Thompson also took some questions. Concerns about Covid were on people's minds. Dr. Thompson said there still isn't a lot of data on how Covid affects cancer patients (while it feels like we've been dealing with it forever, it's been less than a year, and data collection takes time). She does think if your blood counts are normal (especially lymphocytes), you are probably colser to the general population for risk. But she still urges us to be careful.

As for a possible Covid vaccine, she is anxious to see the data from the trials, but she is confident that the FDA would not allow a vaccine to be available unless if was safe.

Someone asked about supplements. Dr. Timmerman, in the earlier session, cautioned about using supplements without getting an OK from the doctor. Dr. Thompson pointed out that there aren't any studies that say supplements will sure anyone's lymphoma. There is, however, some evidence that Vitamin D deficiency can lead to worse outcomes in lymphoma patients. It's worth noting that it's not the same as saying good Vitamin D levels leads to better outcomes. Just the same, a supplement isn't a bad idea, especially as we spend less time outside in the sun. Talk to your doctor.

So lots of good stuff about how to take better care of ourselves. It's exhausting to think about, at times like this, for me, anyway. I'd much rather watch Netflix and eat cookies than eat more vegetables and get up and move, but I have a goal of being around for many years and not being miserable in the meantime. So I do what I can. I hope you do, too.